August 21, 2014 at 9:37 am #725
I just got access to my online medical records the other day, so I reviewed all of the results of blood tests since 2006 (as far back as the system would let me go).
I just learned that I am compound heterozygous MTHFR C677T/ A1298C and the hematologist who ordered the test back in 2006 never bothered to tell me the results. Why did he even order the “dam” test if he was not going to share the significant results with me? Not surprising, though. I fired him after my first follow-up consultation for his weird, creepy behavior.
So, I just found the MTHFRHEDS.com website, in which Deborah McQueen connects the dots between her compound heterozygous MTHFR C677T/ A1298C and EDS hypermobility symptoms. Interesting stuff!
I also checked out MTHFR.net this morning to get some additional insight into how this genetic mutation may underlie my huge conglomerate of symptoms.
So, will this be yet another red herring, or may I be on to something significant here?August 22, 2014 at 9:34 am #5039SunshineLollipopsParticipant
Welcome to the wonderful practice of doctors. My primary doctor is okay, meaning ,I do all the research ,bring in the results and she writes the prescription. My cardiologist was a moron who after having allergic reactions to 2 different beta blockers decided there was nothing more he could do to help and that I should drink more water and not have caffeine, which I drink about 100oz of water or more a day and do not have caffeine. My heart rate was 170 and I was crying on the phone with the nurse because the good doc would not even schedule me an appointment. The very best doctor with thorough knowledge and excellent bedside manner was….wait for it…. a podiatrist! Yes, a foot doctor, looked at my purple feet and said ”you need to get your heart checked”. Maybe you already know this but in case you don’t here is the truth, if a ”doctor” cannot sell you prescriptions he cannot keep you coming back in and thus cannot keep you as a patient because you are not a profit. Medicine in this day in age is money unless you can find a rare doctor who actually went into to medicine to help. I am going to start reciting their pledge to “do no harm”. In not treating, or in your case, withholding any information, you are in fact doing harm. Honey, you have to be the one fighting for you, spending countless hours reading things you may not even understand, and then looking up those things and reading forums to find information. It seems like you are but to anyone else reading this please take this to note. Your doctor doesn’t live in your body, he will never know how it feels to be you, he will never go home thinking about your suffering, you have to be your own doctor and present what you find, you have to fight for you. Many hugs to us all. May we all find what works for us. 🙂August 23, 2014 at 8:50 pm #5040
Yep, that just about sums it up when trying to get answers for such complex medical problems. I caught my first glimpse of the multi-billion dollar medical machine while doing undergraduate studies in neuropsychopharmacology. I dumped the whole idea of devoting my career to medical research when I was first exposed to the dirty underbelly of it all.
Fortunately, my logical, analytic brain has served me well and has enabled me to find a viable treatment for a 20+ year bout with vestibular dysfunction that stumped the best neurotologists I could find. These guys were great doctors who cared about me as a person and were not afraid to tell me that they did not know what was causing my symptoms. They also did not roll their eyes when I wanted to discuss the current research on the subject.
The main doctor I saw had edited a 1500-page medical school textbook on neurotology, which covered everything you never wanted to know about disorders of the ear and vestibular system. Before delving into my own research in Internet Land, I bought the book and read it from cover to cover (good thing there were lots of pictures!). I did this so I would know where NOT to look when searching Medline online.
When I fired up the Medline online database, I just started typing random words into the search field. I knew I had EDS, so I typed that in and then looked for new key words. I soon learned that not many people with EDS also have the kind of vestibular symptoms I did. But the word “platelet” came up in a few articles, so I did a search on “platelet vertigo” and the rest is history. I now take antiplatelet medication for a platelet “clumping” problem and the vestibular symptoms (along with vision problems and the weird cold weather shoulder and hip pain) are gone.
After doing a bit of research on MTHFR and learning that about 15% of the population also comes up compound heterozygous C677T/A1298C, I cannot see how this in and of itself is significant in my quest for better understanding of the “weird head” symptoms I have in the transition from wakefulness to sleep. I know that if 15% of the population had this problem, they’d be making a lot of noise about it because it is extremely uncomfortable.
So, it looks like back to the drawing board for me…October 1, 2014 at 9:28 pm #5050dino68Participant
Mog the Dog, I have been having constant vertigo for years. I have spent tons of time reading about it and going to doctors including neurotologists. I am going to do some reading on platelet vertigo. I did read somewhere that an aspirin a day might help and have tried that along with about 100 different things. I do have factor V Leiden, so maybe the antiplatelet therapy will help me. I will definitely give it a try. What medicine are you taking? I also have been having strange vision problems where my prescription changes weekly and I have pain pretty much all over but both of these could be from EDS. Also, I have a PICC line and now that I have an infection and have to take antibiotics twice a day it keeps clotting off even though I flush it with heparin. The nurse does not understand why it keeps happening. My blood work has been off too with worsening neutropenia and anemia along with a lot of other things, but I had a normal bone marrow biopsy.
My MTHFR genes were both normal and I have the POTS, EDS and MCAD. There were some other ones that were off like the COMT genes where I was homozygous on a couple of these and they have to do with how you process catecholamines and my levels were over 2000, so I wasn’t surprised to have abnormal genes here, especially since several people in my family have hyperadrenergic dysautonomia.
I am going to go take another baby aspirin just in case it helps my vestibular problems. As much as I have been lying around lately and with the factor V and family history of blood clots,, I should probably be taking an antiplatelet drug anyway.October 10, 2014 at 10:25 pm #5065
I take Plavix (clopidogrel) and aspirin. Plavix alone does not work. Aspirin alone does not work. Seems I need the synergistic effect of these two to keep the vestibular symptoms away.
I had to go to a special lab to get the platelet test done and it was expensive, but I am glad I did because my quality of life is so much better now. I don’t think the platelet problem is related to my EDS, but I cannot say for sure.
Anyway, I hope you can find some answers soon.
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